It is important for researchers and practitioners in the field to work towards finding ways to improve the often socially isolated lives of people with profound intellectual disabilities (PIMD).

This blog reports the results from a Dutch study by Kamstra et al (2015) in which the researchers sought to discover the factors that can most positively impact on the development and maintenance of the informal social networks of people with PIMD.

The authors observe that most people without disabilities show what they describe as ‘initiative’ in establishing and keeping their social contacts. The dependence of people with PIMD makes this difficult and in some cases impossible, thereby limiting people’s social contacts to those with paid professionals and formal carers.

A lack of any or only a small amount of ‘informal’ social contact can, the authors argue, lead to ‘severe deprivation’ and is an indicator of a poor quality of life.

The authors observe that in the Netherlands, it is usual for PIMD to move into out-of-home care once they become adults and that this has the impact of severely restricting their social networks. The facilitation role played by parents whilst the person is living at home is often not taken up by carers or support workers in the new setting.

A lack of any or only a small amount of ‘informal’ social contact can lead to ‘severe deprivation’ and is an indicator of a poor quality of life.

Methods

A total of 13 living arrangements in the Netherlands participated and information was gathered from 205 people with PIMD. All had a profound intellectual disability as well as a severe or profound motor disability. Many also had sensory impairments.

Two direct support workers with long standing experience with each person were also invited to participate in research interviews and provided answers to questions about each person’s social contacts over the previous 12 months and to estimate the total number of those contacts irrespective of their duration.

The age of the participants was measured as a continuous variable in years. The participants lived in a range of types of supported accommodation in the Netherlands. Communicative abilities were categorised by the researchers, as were the current living arrangements of each person.

A regression analysis was performed with size of social network as dependent variable and age, communicative abilities and current living scheme as explanatory variables. Significant related independent variables (P < 0.10) and interactions between variables were included in the model.

Results

The 205 research participants had an average of 5.1 informal contact persons – a small social network of people who are not paid, or in a ‘formal’ caring relationship with them.

Age was the only variable significantly associated with the size of the network, while communicative abilities and living arrangements were not significantly related to the informal social network size.

There was a negative link between age and the size of the ‘informal’ social networks of PIMD. The networks of older people with PIMD were smaller and they experienced less frequent contact with the people in their network than younger people with PIMD.

Living in what the authors describe as a ‘campus’ residential setting also seems to contribute to a lower frequency of informal social contact for PIMD. Living in a ‘campus’ style environment with up to 100 people on the same site and being ‘older’ limited the already limited number of social contacts for PIMD.

The communicative abilities of the study participants did not appear to significantly impact the size of the informal social networks of the participants.

However, the authors note that they have interesting ‘interaction effects’ meaning that amongst those in the study, people who had greater a greater range of communication abilities and lived in smaller homes in the community had larger social networks and more frequent informal social contacts.

The 205 research participants had an average of 5.1 informal contact persons.

Discussion

The authors observe that the trends they found in their research with people with PIMD echo those found in research with people with intellectual disabilities. For example Bigby’s (1997) study which showed that people had small social networks which seemed to shrink as they aged and that they lacked intergenerational and situation-specific friendships.

The findings from Kamstra et al’s (2015) study suggest that without intervention from a person within the ‘formal’ social network of the person with PIMD, it seems unlikely that new social connections will form or established ones be maintained.

For people living in ‘campus’ style or clustered accommodation there is a great need for the development and implementation of proactive strategies, which work to develop social connections and assist PIMD to build meaningful relationships with people other than those paid to care for them.

Without intervention from a person within the ‘formal’ social network of the person with PIMD, it seems unlikely that new social connections will form or old ones will stay.

Strengths and limitations

The authors of the study acknowledge that a key limitation of its design is the difficulty in collecting data from participants who have significant communication difficulties. As such, data is collected ‘by proxy’ in this case through their direct carers.

It was also difficult for the researchers to make strong comparisons across the broad range of accommodation types participants were living in and the models of care being used to support them.

Whilst their conclusion that age is a more significant factor than accommodation type or communication ability in determining the number and frequency of social contacts for people with PIMD, these conclusions should be treated cautiously and merit further research.

The findings from the study should be treated cautiously and merit further research.

Conclusion

The authors suggest that using models of social interaction such as that developed by Johnson et al (2010, 2012) may be the key to assisting PIMD to develop not only more, but more meaningful relationships with others. The success of this strategy hinges on the work of professionals, those in ‘formal’ social relationships with PIMD and their skill and willingness to work to facilitate this change to improve people’s quality of life.

Focussing on the development of better formal relationships is, of course, important, but seems like a disappointingly narrow idea of what social networks might look like and confines them to the service environment. The possibility of meaningful relationships, which are situated in the broader community context seem a distant and perhaps unrealisable goal.

Kamstra et al’s (2015) finding that those who were living in community-located accommodation had larger and more frequent ‘informal’ social contact than those located in ‘campus’ or institution-style residences provides a tantalising glimpse of what might be achievable.

Sian has worked in the field of intellectual disability for over 20 years. Much of this time has been spent working the areas of sexuality and relationships education and abuse prevention.
She recently completed a PhD at LaTrobe University in Melbourne which examined the impacts of engagement in self-advocacy groups on the social identity of adults with intellectual disabilities.
Sian is a Research Assistant in the Living with Disability Research Centre at LaTrobe and sessional lecturer in the School of Social Work and Social Policy.